Angelman Syndrome Families on the AAC Journey

Quick Overview

The 2017 ASF Family Conference featured a panel of parents discussing Augmentative and Alternative Communication (AAC) for children with Angelman Syndrome. They highlighted the evolution of communication systems, from bulky devices to consumer technology like iPhones and iPads. The panel stressed the importance of supporting children to realise their AAC devices can be their voice and resilience was identified as a key factor in the AAC journey. They also emphasised the importance of creating a safe and supportive community for families and children. The panel discussed the importance of building communication skills, individualised communication assessments, and supporting dyspraxia triggers. They shared personal experiences and emphasised the importance of using core words and verbs in AAC systems. The panel also discussed the concept of aided language simulation and play in AAC, and the importance of finding support and guidance. They encouraged families to celebrate communication successes.

Introduction

At the 2017 ASF Family Conference, a panel of parents presented on Augmentative and Alternative Communication (AAC) for the first time. The speakers, Sarah Rivard, Isabel Orellana de Chang, Jodi Melendez, and Keisha Tipton, discussed the importance of researchers and families working together in 2017. They emphasized the need to share success stories while keeping it real.

Evolution of Communication Systems

The panel highlighted the evolution of communication systems, from bulky devices to consumer technology like iPhones and iPads. They discussed the challenges faced by families in accessing communication devices in the past and the readiness assumption for communication devices, with an exemption for children with Angelman Syndrome. The introduction of AAC devices using ordinary technology was also discussed.

Supporting Children in Realizing Their Voice

The panel stressed the importance of supporting children to realize that their AAC devices can be their voice. They provided examples of using AAC devices to understand and respond to a child’s needs. Resilience was identified as a key factor in the AAC journey, with a focus on wellness and building resilience for children with Angelman Syndrome.

Creating a Safe and Supportive Community

The panel emphasized the importance of creating a safe and supportive community for families and children. They discussed hyper-arousal and anxiety in children with Angelman Syndrome and the importance of calming strategies and sensory integration. The speakers also highlighted the importance of forgiveness and not comparing oneself to others.

Building Communication Skills

The panel discussed the importance of building communication skills starting with safety and solidarity. They emphasized the significance of self-determination and giving children power over their lives. The use of multimodal communication and different modes of communication used by children with Angelman Syndrome were also explored. The importance of using symbol sets that are transparent and concrete was stressed.

Individualized Communication Assessments

The panel highlighted the importance of individualized communication assessments and focusing on functional skills and abilities. They emphasized the significance of natural supports and integrating communication skills into everyday activities. The use of the least dangerous assumption and aiming high for children with Angelman Syndrome was also discussed.

Supporting Dyspraxia and Triggers

The panel discussed the importance of self-talk and support for dyspraxia triggers. They emphasized the significance of time and expectant pauses in supporting dyspraxia. Redirecting and reflecting time for emotional triggers was also highlighted. AAC devices with expectant pauses for communication were identified as valuable tools.

Personal Experiences and Support

The panel shared their personal experiences as parents of children with Angelman Syndrome. They discussed the challenges of accessing AAC and the various disorders that intertwine with it. The importance of syncing the body back together quickly when there is a brain-body disconnect was emphasized. The speakers also encouraged others to reach out for questions or support.

Core Words and Verbs in AAC Systems

Isabel Orellana de Chang shared her experience as a parent and the challenges she faced in finding the right AAC system. She emphasized the importance of using core words and verbs in AAC systems rather than focusing solely on objects. Isabel discussed her journey of gradually increasing the number of words per page in AAC systems.

Making AAC Systems Fun and Engaging

Isabel also discussed the importance of using a key guard to make AAC systems more accessible and affordable. She talked about the need to be creative and problem solve when it comes to making AAC systems fun and engaging for children.

Aided Language Simulation and Play in AAC

Jodi Melendez discussed the concept of aided language simulation and play in AAC. She emphasized the importance of making modeling fun and engaging for children with Angelman Syndrome. Jodi shared examples of how she incorporates play into AAC modeling, such as using dolls to teach about sickness or seizures. She encouraged parents to make AAC modeling at home fun and not feel like therapy.

Finding Support and Guidance

Sarah Rivard shared her personal journey as a parent and the challenges she faced in finding support and guidance. She talked about attending a conference and feeling lost until she connected with other families and professionals who could provide guidance. Sarah emphasized the importance of timing and finding the right support at the right time.

Celebrating Communication Successes

Sarah discussed the impact of attending a camp for families with Angelman Syndrome and how it changed her perspective on her daughter’s abilities. She started her own foundation, Hannah’s Hope, to provide support and education for families and educators. Sarah encouraged families to find their tribe and connect with others who understand their journey. She shared examples of her daughter’s communication successes using AAC and the importance of celebrating those successes.